November 13, 2015.. We arrived home at 10:10pm tonight. We had a decent drive until we got to Nashville and then it took about an hour and a half to get through there. We had not had any major delays there in the past. I don't know why we did this time through. 

I noticed on my blog for July/August, we arrived home at 10:05pm so we were within 5 minutes of that same time tonight. 

We will have to return to Little Rock in March, 2016. 
Thanks for caring enough to read this blog.   

November 12, 2015.. We got good news today! The doctor said things look good and then he said "what more can I say". My myeloma marker numbers had improved some since the last time but the main thing to me was they had not gotten worse. In case you don't know, when we were here in July, the MRI showed a spot on one of my ribs in the back. It has been on my mind these four months but NOTHING showed up this time. They found no bone lesions at all. Before I started treatment, there were several lesions on my vertebrae and hip. I am so very thankful there was nothing there on the scans now. 

I recorded the visit with the doctor and also with the nurse practitioner. The nurse practitioner went over all the tests before the doctor and I recorded her discussion as well as his. I thought I would add the audio to the blog but it is going just take too long to do it. 

The doctor is keeping me on the same treatment I have been on. He said since I am doing so well on my current treatment (Kyprolis and Revlimid), he wants to continue with the same treatment.

I guess it goes without saying, we are very relieved and thankful. I want to thank each of you for your prayers and concern.

We will head home tomorrow morning!    

November 11, 2015.. It was a rainy day in Little Rock today but we enjoyed our day off. I did not have an appointment anywhere so we enjoyed not being on a schedule.

Tomorrow I meet with the doctor and learn the results of all the tests I have had this week. I know you can imagine how uneasy I am before I hear from the doctor. 

Since I prefer to have some photos in the blog so it will not be so boring, I am including some below that I made on previous trips here. 

The Arkansas State Capitol 

At the Old Mill

November 10, 2015.. I got finished with the testing today! Yipee! I am glad it is over. The PET did not take as long. They have a new PET scanner and it takes only 15 minutes to do a scan where in the past it took about 45 minutes. It still takes a while for the whole process since they inject radioactive glucose into a vein and then I had to wait for one hour before the scan. I pray these scans do not show anything bad. This whole process of scans looking inside my body has me on edge on what they might find. Now, the wait to see what the doctor will say about it Thursday at 1pm.

It was a beautiful day today with sun and was about 72 degrees.

The presidential debate is getting ready to start. I am going to listen to it. May the best man win...or the best person that is.  

November 9, 2015.. Today was a long day just as I thought it would be but we got all the scheduled tests for today completed. We got back to the apartment at about 7:30 tonight. All the tests went pretty smoothly. Before the bone marrow biopsy, a visit with a doctor's assistant is required to have a physical exam. The place where the exam has been done in the past has been relocated to the Infusion Four area. That is the place where we spent so much time back in 2013. When we went there today, it was like a big reunion. It was so good to see some of the people that had been so good to me back in 2013 when we spent 3.5 months here. I felt like I was a celebrity the way they are treating me. I got lots of hugs which always come in handy to have. We got to see one sweet, young nurse that also has a blood cancer. She had been to Houston and gotten a bone marrow transplant. She seemed to be doing well now and showed us her engagement ring. I sure do wish her well. She had been the nurse assigned to me several times back in 2013. It was so nice to see those people and I wish I could have talked to them more. One of the nurses I saw today is one I had posted about back in 2013. During that Thanksgiving, she baked me a sugar free apple pie and brought it in to me. I am including a photo below Reta had made on her Ipad in 2013. As I explained in the blog back in 2013, she lost her 6 year old son when he was run over by a school bus.

When we were checking in first thing this morning, we saw someone we knew from Rogersville. He is a myeloma patient and we had no idea they were here too. I was hoping to see them again sometime during the day but we didn't. He was having tests today too.  

This is what it looks like in the lobby where we go inside each day we are here. 

Tomorrow, I have a PET scan. That is the only test I will have tomorrow. 

November 8, 2015.. We had a nice, relaxing day today. We woke up this morning with the sun shining in the windows with a nice brisk temperature outside. I think it was pretty much that way back home. We rested up from yesterday and went and got some food supplies to last us the rest of our stay here. We meant to do that last night but we were just too worn out. It was cool here and probably got up to about 60. I suspect that is about the same as it was at home. It was warmer than that when we got up yesterday morning at home. 

Tomorrow will be a big testing day. We have to be there at 7:30am and the last test is scheduled at 5:30pm. That test will probably be later than 5:30 since they normally are running behind schedule late in the day. I have several tests scheduled tomorrow including the bone marrow biopsy. 

I did not mention it last night but we were able to get an apartment through Home Away From Home. As most of you know, Home Away from Home is a ministry of Little Rock Church here in Little Rock. We were so glad they were able to accommodate us. The apartment we were able to get is one we had stayed in before. We stay here starting on November 21 last year. The apartment were we are staying is at Palisades at Chenal Valley. The photos below are some Reta made with her Ipad when we were here last year. She did not have one showing the living room.  

To Little Rock in November, 2015

November 7, 2015.. We made the drive again to Little Rock today. The traffic was ok but it was a hard day. We got up at 5am for the trip but we did not get to our apartment in Little Rock until 9:30pm EST. We drove in rain until we got to Harriman then no rain for the remainder of the trip. When we got to Memphis, we stopped and spent some time with my brother who lives there and did not get back on the road until after dark. I had been instructed by my doctors to take a 15 minute walk every 3 hours to prevent blood clots like I had gotten before on a trip from Little Rock. I had not taken into account I could not get out of the car and take a walk after it got dark so I was not able to walk after I left Memphis. It had been about 6 hours since my last walk. The myeloma and the medication I am taking makes getting blood clots a problem so I am hoping, at this time, I don't get more blood clots like I did once before.
We have a free day tomorrow and then a big test day Monday. I start at 7:30am and the last test (a MRI) is scheduled to start at 5:30pm. I don't normally have that many tests scheduled in the same day. 
I am pretty exhausted but I wanted to add to the blog published so the date would be correct on the post. It is now 2:00am EST. Tomorrow should be a much easier day and we are looking forward to it.  

August 1, 2015.. We arrived back home at 10:05 last night. We drove all day in moderate to heavy traffic. We passed 3 wrecks on the way back. One was a truck wreck and the traffic was held up for miles but fortunately, it was in the opposite direction on the Interstate. We are very thankful for a safe trip back home. 

July 30, 2015..

Before I go into writing my blog for today, I thought it would be a good idea to post my previous blogs so they can be easily accessed. Read each blog starting at the bottom of the page except the first one that started in April, 2013.

My first attempt of three to collect stem cells starting in April, 2013

The three attempts took almost 15 weeks that we spent here.

Our trip to Yellowstone National Park in the fall of 2013

Our trip earlier this year to Mobile, AL and Gulf Islands National Seashore in Florida

We were at the hospital or MIRT all day today. I got my bone marrow procedure done and all went well. They had changed the location and also the people doing the procedure. They have plans to move it again as soon as funds are available. As I have done three times before, I was sedated before the procedure. I don't like pain. 

After waiting quite a while, we were able to see Dr Van Rhee. He told me that I was still stable with my myeloma indicators. He did not have any results of the bone marrow biopsy. He said the MRI indicated I had a 1cm lesion on one of my lower ribs. He was unsure about it because it did not show on the PET scan which showed no lesions. He said if it was still there when I come back in three months, I will need to have a biopsy done. He added two more drugs to the bank of drugs I am already taking. They are Zometa (bone strengthener) and Diflucan (anti yeast). I will stay on the same treatment that I have been on for over a year. I concluded from what he said, I should stay on it until the treatment stops working. Myeloma treatments do stop working eventually so the patient must go to another treatment. That is one reason it is important that new myeloma drugs are coming on the market. My appointment is to return in early November. I was hoping to get a treatment schedule that would allow us to travel more but I am thankful there is something that will keep this from getting worse so I am not complaining.

For those of you that I have told that Dr Barlogie, the former MIRT director and world respected authority on myeloma, was leaving MIRT on July 1, we saw his motorcycle parked at the same place we have seen it parked so many times in the past at the front entrance. We knew it was his because of the license tag with the CURE MM on the tag.  

I seem to be doing real well after the bone marrow procurement procedure with little pain there. I hope anyone reading this is having a real good day.   

   

July 29, 2015.. When I was here in late March, the nurse helping the doctor I was seeing was filling in for the nurse that was on vacation. The nurse that was filling in is normally doctor Van Rhee's nurse. She was the most helpful nurse I have encountered here. I have become accustomed to putting a call in to MIRT to find out something important like treatment or medications, and I would not be able to contact anyone nor would I would not receive a return call. It is so very frustrating to need to find out something important and not be able to contact anyone. About a month ago, I got a note (as did Dr. Van Rhee's other patients) from her and said that she had been reassigned to another doctor, even with the objections of Dr. Van Rhee. I was so disappointed to hear this. My thoughts were "now I have gotten someone that I can contact if I have a problem or need something important and they have reassigned her". I got some good news last night. Management is leaving her with Dr. Van Rhee. I feel so much better about that now. I sent her a note to her UAMS email address last night thinking I would hear back from her today. About 10:30 last night, I got a reply and she said she would talk to the doctors that determine the results of the biopsy samples as well as Van Rhee. The question was should I wait until Monday to see Van Rhee or go ahead and keep the appointment with him tomorrow. I got a call from her today telling me that Van Rhee thought it best to see me tomorrow since he would not be seeing patients on Friday and would not be working on Monday. He will have partial results from the biopsy and full results from the other tests I have had. If the biopsy should show a surprise later, he can adjust his treatment for me. That sounded fine to me so we will be able to head home on Friday as we had originally planned. 
I had the PET and MRI scans today. The PET took much longer than usual. They have been doing so many scans, they had to rent a mobile PET scanner that is in a big truck trailer outside their normal scanning area. The whole process of using the mobile scanner took much longer than the scans I have gotten using the scanner in the hospital. They have a new scanner in the hospital they will put into use next Monday. When I finished with the PET, I went to the MRI area and as soon as I went to the check-in desk, the lady at the desk lit up with a big smile and came and gave me a hug. She had remembered me when I was here before. It was good to see her again. So many people that work there are so different than at home. For example, we were walking down the hall going to another appointment and this man pushing a trash buggy asked if he could help us find something. He had a really big smile and when we left him, he was still smiling and told us to have a good day. 
Tomorrow, I have the bone marrow at 9am but we plan to be there much earlier than that, so maybe they will start me early so there will be more time to determine the results. We have our appointment with Dr Van Rhee at 1pm.   

July 28, 2015.. I was disappointed in the progress today. Everything went well on my first scheduled things to do at MIRT today, and then I went for a consult with the Physician's Assistant before I was to go for a bone marrow biopsy procurement. During the questions, he asked me if I had stopped taking the Xeralto 3 days ago. I told him I had not and said that I had not been told to do so in the instructions I had gotten from MIRT. He said I could not have the procedure done since I had not stopped taking the blood thinner 3 days prior because it was too dangerous. He rescheduled the procedure for Thursday this week and at this point, I am not sure when I will be able to see my doctor since my original appointment was the same day I am now having the bone marrow procedure. It is important the doctor have the results of the biopsy and the other tests before he can determine the best path forward for me. It looks like instead of leaving Little Rock on Friday as we had planned, we might not be leaving until the following Tuesday since Dr. Van Rhee does not see patients on Friday. 

The Physician's Assistant told us today that my new doctor (Van Rhee) is the best doctor at MIRT and has recently done a presentation to the National Institute of Health. He said he is absolutely brilliant. I look forward to meeting him and finding out what he has planned for me.  

It was very hot here today. The high tomorrow is forecast to be 100. It was in the high 90's today. It sounded kind of funny when they were giving the local weather forecast, they said a cooling off period was coming later in the week. It was forecast to be down to 93.

Tomorrow, I have a PET scheduled to start at 9am and a MRI at 1pm.

We were so blessed to be able to get an apartment for this stay. It is the same layout as we had when we were here in March this year. It is not the same apartment but exactly like that one except for the furniture. We are so fortunate to be able to stay here. It is in the apartment complex called "The Park Avenue Lofts"     The rate is less than we would have had to pay for a hotel room. 

July 27, 2015.. Monday..We made the 620 mile drive to Little Rock after we got a very late start. We were not able to leave the home area to head to Little Rock as early as we had planned because we had to wait until our Credit Union opened to sign a form affirming we had fraud on our checking account where someone had fraudulently used a debit card taking money from our checking account. We had to wait until 9am for the Credit Union branch office to open and take care of that business before we could head to Little Rock. We had a good drive and the traffic was much lighter than many times before when we have made the trip. We had no delays due to wrecks or road construction/repairs. It seems that Monday is a very good day to drive here on Interstate 40. I am sorry that I was not able to update the blog last night. I was just too tired to do it.    

Entry for March 27, 2015.. We left Little Rock at 8:40am to return home. We stopped for a burger in Memphis and visited with family for a bit. We arrived home at 10pm. The drive was uneventful but the traffic was heavier than it was on our way to Little Rock.

Something I meant to add to the post for Thursday.... When we got ready to leave the doctor's office Thursday, Dr Jethava gave both of us a hug. I thought that was pretty unusual. I liked him as my doctor and I will miss him. 

I will pick up on adding to this blog during our next trip to UAMS/MIRT in July.  

March 26, 2015.. I got some good news from the doctor today and got some disappointing news. I will explain the disappointing news first. We were told last November if I was doing as well when I returned to UAMS this month, he would take me off treatment. Today he said I should stay on the same treatment as I have been getting. The treatments are a combination of Thalidamide, Kyprolis and Dexamethazone. That means I will be getting 2 treatments a week during 3 weeks out of each month. I have been on this schedule since last June. He said I am smoldering now and the treatments are keeping me that way.  I don't disagree but I am very disappointed since we had planned a 6 week trip out west starting in late April. The treatments will eliminate any possibility of taking that trip or any long trip. 

The good news was he said he was pleased with how I am doing on the treatments and I am stable. In his written diagnosis, he stated I am in very good partial remission.

I will have to change from the doctor I have been seeing during this past year to another doctor since he is taking over other responsibilities and will not be seeing patients. I am changing to Dr Frits Van Rhee. He has been with UAMS/MIRT and treating myeloma for a long time compared to most of the other doctors at MIRT. 

We were saddened to hear a myeloma patient we had seen many times when we are here, especially when we were here for three and a half months, has passed away. She was only 42 years old and was from Austria. 

The doctor told me there are some new drugs coming soon for myeloma. They are antibody drugs and work totally different than what is available today. He thinks one of them will be available in about one year. 

We leave to come home tomorrow. We plan to take our time and arrive home tomorrow night sometime. I will make another post sometime after we get home.     

March 25, 2015.. Before I give a summary of today, I will post some photos of our apartment. I thought some photos might be a little more interesting than just text. I did not bring a camera with me so I made these with my phone. You can click each photo to make larger. 

As I have said before, our apartment is part of the Park Avenue complex where shops and apartments are located. Our apartment is in the second building in this photo. 

I was all dressed up yesterday getting ready to go to same day surgery for the bone marrow procurement.

Now for a summary for today.... I had my first appointment at 9am for the PET scan. The only thing you can have by mouth is water for 6 hours before the test.  Before they do the scan, they inject some radioactive glucose and then I had to wait for one hour before they could do the scan. I guess this is to allow the radioactive glucose to spread all over the body. After the one hour wait, they did the scan which took about 45 minutes to complete. After the scan, we hurried back to the apartment for lunch. I had another appointment at 1pm for a MRI scan. That scan also went with no problems and was completed in about 45 minutes.

I want to add a comment that I left out about the bone marrow biopsy procurement I had yesterday. They got enough sample to do a gene array. This will tell if I have high risk myeloma or low risk. On previous gene arrays I have had, it has shown that I have low risk but this can and does change sometimes.

Tomorrow, I will see the doctor and learn what the scans, biopsy, and lab tests showed and what the doctor thinks about how I am doing and hear what his plan for treatment will be. As anyone knows in situations like this, the whole trip is a tense time. While we are at home or on a fun trip, we can put myeloma out of mind much of the time but when we are here, it faces us directly. I look at each of the important items on my lab test results and hope that it did not go in the wrong direction. We are always very tense about hearing what the doctor has to say. Will it be good news or not so good news? We will not know until tomorrow.     

March 24, 2015.. Our schedule today was: pick up all of my appointments paperwork (called packet pickup) at 10am. We then went to the blood draw area where I donated about 11 vials of blood and delivered my 24 hour urine samples. We then met with a Physician's Assistant for him to make sure I was ok to have the sedated bone marrow biopsy procurement procedure. After that appointment, we went to the outpatient surgery area for the bone marrow procurement. That procedure went very well. I hope I never have to go back to the way I was getting it done before I began having the procedure via sedation. It was a very painful procedure before, and now I am asleep while it all is being done. I had 5 or 6 the old way. It takes more preparation now but it is worth it. After I finished up in recovery, we were able to leave. I was ready to eat and drink some water since I had not had anything since midnight last night. 

Tomorrow, I have a PET scan at 9am and a MRI at 1pm. I had to restrict what I had to eat tonight due to having the PET scan. That was harder since I was really hungry since I had not had anything to eat since yesterday evening.

Things went very smoothly today and hope they will tomorrow also. 

March 23, 2015..  I am sorry that I am late in posting this note. Last night I was just too tired to do it. We made the drive to Little Rock today (Monday) with no problems. The traffic was probably the lightest that we have had since we have been coming here. It was a rather pleasant drive but would have been more pleasant if we had not had to do the drive in sort of a rush. We needed to get here by 6pm before the office closed in order to pick up the key for the apartment. We did not make the 6pm deadline but got here about 10 minutes past. It is hard to believe we drove for 11 hours and were late by 10 minutes. We were able to get what we needed to get into the apartment anyway. We were fortunate enough to get an apartment again from Home Away from Home. We were surprised that we were able to get one since I had talked to the person that manages the apartments for the church and there was not anything available. One became available at the last minute. As I have said before, Home Away from Home is a wonderful church ministry where they lease a group of apartments at two different apartment complexes and then rent them out to myeloma patients while they are in Little Rock for treatment or testing. The apartment we have this time is one where we have never stayed before. It is very nice. The building is 2 years old and is located in a new shopping area. Within walking distance are many shops, eating places, Target, Cheddars etc. It is called Park Avenue and the apartments are called Park Avenue Lofts. It is close to UAMS where I have to go for testing and doctor visit. The rate is less than we would have paid for a hotel room. I like one of the security features. A person cannot get into the building without an electronic device to unlock one of the doors to the building. It is similar to an electronic remote to a car. We both feel very blessed to have been able to get an apartment here.